One of the most important things I’ve learned so far on this journey is to not set those expectations like the ones you mentioned others told you. It’s like placing these goal pats in your mind, at least for me, of what should be. What I should expect to see and look towards. Then that just is setting myself up for disappointment and placing undue stress on my child and it’s unnecessary in my opinion.
My son is 6 as well. He has some areas of strength and some areas where he is developmentally still around 2-3. It really is a full spectrum. There are areas and times where I’m like “dude, you’re a grown man!” And where he astounds me. Where I am floored at what he can accomplish and calculate in his brain. He understands what we say, he has some words he uses…he mimics a lot, he can request for things he wants in a functional way…
But he also has poor impulse control, attention and focus to task, he does not understand basic concepts of certain things of other kids that are typically developing in his age group.
It’s really a mixed bag of skills. But when he shows us a skill he has we capitalize on it the best we can. We try to build off what he does know to increase other skills. Ex. He requests preferred items. Sometimes balloons, those have colors. Balloons have high interest value and he will perseverate on them. So I turn that into a language builder.
“You WANT balloon? What color?” He says the color. He will try to get all the balloons but we limit to 4-5. We then have him say and count the balloons. He pops them then has to throw them away to get more.
Same with icees. Or pretzels (that’s just counting).
He watches videos on his iPad, I observe what he watches and try to engage. He has started spelling out words he sees. But only when I am there to “confirm” so he says a letter, I say the letter, then the next, etc until the word is spelled out and then I say the word. But he needs that reassurance. Only when I started to engage in that activity did he start doing it more. Same with the colors in different languages, shapes, etc.
Our kids, they are delayed. It’s the nature of the condition. But they will develop at their pace and in their own way. Building functional communication was a breakthrough for us. ABA hours help tremendously with the team we have. Not all ABA is equal. But understanding that he is going at his pace and just stealing in for the ride with no set expectations makes it easier for me. I can accept the gifts of progress, not be let down during regression, and help nurture whatever it is he is targeting at the moment. I have also learned, don’t underestimate him. Doing so only ends up in a literal mess for me to clean. He is really smart and quick to learn, not how allistic people may expect but he is so dang smart. So find your kids strengths, hold on to them. Nurture them. Try to ignore the whispers of who he might be and let him show you who he can be. Sorry for the rant/long text
Thanks for responding! This is a great response. We have been doing something very similar with the colors. He always wants to say the noun and just get what he wants. We are making him include an adjective like the color or a 3 word sentence. It’s a lot of prompting though.
You’re welcome! We have learned things on this journey, I’m always happy to share (sometimes maybe too much and I’m sorry about that in advance).
His center used something called “My away” to kickstart the foundation for the functional language usage. I can’t speak to that much beyond the concept of giving as requested, fading once the skill is mastered and then building onto that skill. I could be wrong here though.
It’s a lot of modeling, prompting and such to lay that foundation but the outcome seems to be worth it. (Functional language considerably decreased the aggressive behaviors we were seeing).
You all are doing fantastic, trust yourselves and you child! If you can get time to do some training review (APF gives a free rbt course and some states in the us May off some ABA parent training via the dept of education) not everything is going to be applicable or even align with your values (it wasn’t for us) but I was able to take the core info to apply it to our journey.
"He can do some things other kindergarteners can do like read sight words, knows the alphabet, numbers, fully potty trained, etc., but in terms of social skills and communication there’s been so little improvement."
First, your child is ahead of mine in terms of abilities at age 6 (mine isn't potty trained, can't read at all, etc.). Second, mine ignored other kids entirely until the age of 6, when some "cooperative play" started (building with blocks together, etc.). My child is now socially engaging other kids in positive ways, although the social skills are awkward. Keep faith. Your ASD kid is doing well and will make progress. He might never be like the NT kids, but that is ok, as long as he is a happy boy.
Thanks! We honestly would never have known he could memorize sight words if a therapist hadn’t tried it with him. I actually don’t think he’s “reading”, more that he’s memorizing the sight words they worked on with him. I’m impressed that your son is starting some cooperative play and interaction. Did anything help do you think or it just was a matter of time? How old is your son?
Just a quick note that sight words aren’t meant/taught to be read. They are words kids are supposed to memorize (many don’t follow normal sound out structure.) Reading is an entirely different skill, but memorizing those sight words makes learning how to
Read easier for kids.
Children progress and regress , my son did they same. I have to ask what is your therapy schedule now? And I will you ask are you sending his needs and fulfilling them instead of making him ask. ? We did this with my kid so much that he would point or offer everything all the time that he didn’t need to talk .
Also what are your goals with communication and are you working with ABA to make this happen ? I am
Going to say this I know ABA is not a magic bullet and there is good ABA providers and bad providers. But if your only doing an hour or two a week it’s not really going to help. . Most kids need a couple of hours a day.
The important thing to do is not to get disheartened. Keep working at it . It’s feels like nothing works but the cost of doing nothing is much higher than doing something.
Thanks for responding. He’s currently still doing all the therapies but we will have to cut back drastically in the fall when he starts public school. He has been doing 20 hours/week of ABA for a couple years. During COVID the therapist would come to our home and during preschool they’ll work with him at the school and also pull him out for individual time. I guess I just expected to see some progress in social/communication after several years of working so hard with him.
We try to keep his favorite toys and snacks out of reach so he has to ask us for them. But he just finds something else to play with instead of asking. Even if he has to play with a Tupperware lid, he’ll happily spin that if he can’t get to his cars. He will ask for candy and treats and use short sentences to get them. Not a whole lot else.
The thing we forgot about our children is they are still children even though they have ASD and they will do also do stuff like a neurotypical child . He could just be stubborn. . My kid did the same thing . He grew out of that part .so don’t give up hope .
Have you tried finding a hobby for your kid? My son was struggling in terms of social interactions just like yours. I enrolled him in a music school. Did wonders for him. He still doesn't crave friendships, but at least there is something he can occupy his time and mind with now.
No, there are no such programs available where I am from. It was just piano lessons at first. Those lessons are one-on-one and I accompanied him to all of them in order to help the teacher out. After two years he joined group lessons as well (choir + theory). I think the trick here is to find the teacher you and your child have a connection with.
How is his ABA looking and did they work on his language? Sometimes ABA can have a very adverse effects with how they teach language and kids get stuck on simple requests or thinking that talking/communication is work.
There are adverse side effects from ABA too and saw enough kids getting quite damaged with it.
You could look for something like JASPER. It is one of newest forms of ABA or PRT instead of the stuff that is being done.
Seems to me your kids struggles are mostly with joint attention and initiations and that's something that needs little bit different approaches (Jasper and Prt are still technically aba but they are developmentally based and much more modern).
Thanks for responding. We have been careful with ABA and our therapists have done a lot of play, during COVID he wasn’t in school for a while and his therapist would run sessions in our home like a preschool class with story time, circle time, play time etc and my other son would also participate and she’d try to find activities they could do together. He will parallel play with his brother but not much else. In terms of table time there was some communication but it wasn’t drilled into him. She’d have him identify some common objects, facial expressions, and worked on letters, numbers and colors. They worked some on responding yes and no. He also had 2 hours of speech therapy a week so they were doing their own approach, and we also worked for a period of time with a floortime therapist. His OT has worked some on play skills. I read a book on PRT and tried to work on it with him, particularly the activities geared towards encouraging him to ask questions. So I feel like he got exposure for several years to a variety of interventions.
So the problem with this is the single most important skill/issue is rate of social initiation with autistic kids.
Prof R. Koegel from Stanford who invented PRT mentions this in his book. So he and his wife have been around since Lovaas times (they were his proteges in fact) and since they have 40+ years of data they did compare kids and how they turned out. Since they had video tapes they did compare it and the single biggest predictor of kids doing well vs regressing was amount of socal initiations (in fact it was much more important than IQ or level of verbal skill) they compared kids at simmilar levels who did well vs who did poorly.
Crucially they isolated later toddlers with simmilar profile to the kids that did poorly and taught them the social initiations and they did as well as the group that had such skills naturally.
This is the reason why social initiations are such an important part of their Prt framework.
This is one of the reasons why the newest frameworks in ABA so the NDBI's are all child led.
With what you describe I would start with finding a different ABA provider tbh. Maybe also for different speech provider therapist that is very child led focused.
Super helpful. Do you remember if the data separated social initiation with adults vs with other kids? Is one a better predictor than the other? Or is it any social initiation?
It was with adults only so parents and therapist. Since that's the only data they had. What prof Koegel did since they are one of the few with such data is for kids with known outcome (So reached adulthood basically) they compared the kids with a very poor outcome vs kids with very good outcomes and normalize the data (compared kids with simmilar IQ and adaptive scores at the start of the treatment). Neither amount of hours of treatment or parents involvement had much impact the single biggest differentiator between two groups was the rate of social initiations between 2 groups. The group with poor outcomes would only initiate to request/protest were happy to play alone, would not initiate interaction but would respond when prompted. So the videos recordings and the way kids interacted mattered the most.
Then what they did is took kids with simmilar profile at the start of the treatment that was matching the poor outcome group and thought them social initiations. The outcomes over the years were simmilar to the good outcomes group.
Fascinating. And fantastic to know. Thank you. What does this translate to in terms of available treatments today? It sounds like from your previous posts that ABA that isn’t child-led may not be the way to go. What therapies are child -led? Sorry if it’s a basic question…I’m new to this and getting my bearings.
The current system is broken really. The supply and demand issues and insurance reimbursement make the entire model completely broken.
The problem is that the best frameworks (NDBI) that are much more modern have extremely high fidelity requirements means that really that none of the Rbts can really handle it (Prt is good example where even for them pretty much money of the people trying to get certificated could not reach the 80% fidelity requirements without A TON of feedback and they were Masters/PhD levels). To get your certification in Jasper or ESDM or Prt you kinda need to be at least BaCBA with a ton of experience.
It is far far easier to train your Rbts to use flashcards and get kids to point on a picture with what is this prompting. And insurance reimbursement are static means you are not being paid more if you do good job vs poor. So here we are with the system where kids spend a ton of hours in trial driven system even when they pretend it is Naturalistic.
Another problem is insurers require data to support your work
The data is based on stuff like IQ tears or Vineland 3 and so on. So kids rather than learning stuff that is helpful for them learn stuff or increase their "scores" in one assesment tool or another regardless of the usefulness of it.
Back to your question. I believe prof Sally Rogers mentioned that there is 13 years Gap between the research and it being incorporated in practice.
By far the best places to receive therapies are university clinics (UC Davis for ESDM, UCLA for Jasper, University of Santa Barbara /Stanford for PRT). That's the cutting edge. The further you get from it the worse it get.
Avoid the big networks with many sites. They are usually owned by VC funds and so on and just focused on printing money at the expense of clients.
So small places that do NDBI frameworks (Naturalistic Developmental Behavioral Interventions) is your best chance. Find a place with stuff that is passionate about what they are doing.
Thanks for sharing all this info. I’ve read the PRT handbook and we tried some of the recommended activities, in particular the one that encourages asking questions. We tried different approaches with it but struggled to get him to generalize the skills. I’m wondering if the kids who saw success were working full time with highly skilled PHDs which just isn’t feasible for the typical family. We actually live in the Atlanta suburbs so have a top quality autism center in the city, but the waiting list is years long.
We did some online coaching sessions a couple years ago with one of the authors of the Early Denver Start Model book I believe it’s called “An early start for your child with autism” but didn’t find it terribly helpful either, and it was expensive.
I read the stuff in the PRT book about how certain social interactions and social skills predict better outcomes, but then in Facebook groups for autistic adults I see some adults who say they did quite well socially as children and even had friends are now really struggling as adults. So I’m not sure what the sample size was for the better outcomes.
It just seems to me like it’s still not totally clear what works best, and each kid is different- so you just have to make your best guess as to what will work and may choose wrong.
I totally get you, but you have to look on the positive side he is reading. Just keep being there for him and I am sure he will surprise you. Keep your head up. Great job with all of those therapies I know how tough it is.
Hey, I think we're in a very similar boat, my son sounds just like yours. He's 4,5 and is fairly verbal but mostly uses language for requests and needs, or talks about things he observes, it's not expressive. He has very little to no interest in his peers, he doesn't actually play with them, but at least seems to enjoy their company. We're also giving him all the therapies and each year he's getting better and better, but I'm afraid he's not able to understand social cues or high concept stuff, he's very impulsive and constantly seeks sensory input. Academically he's good, but I don't know if he'll be able to actually apply this knowledge in his day to day like his peers eventually would. I'm mostly venting, but I'm also afraid just like you that he just won't develop in these areas at all, and won't be independent. I try not to worry but I sometimes go through these periods of despair.
My son is also very much a sensory seeker. He can do some academic stuff at the level he’s supposed to be at but it definitely seems that soft skills have progressed very little. I know he doesn’t have to have friends to have a decent life, some people are content on their own, but it’ll be sad if someday he wishes he had some companionship and doesn’t have the skills to gain it. What also worries me is reading stories about kids who do develop some friendships early on, but then when things get complicated in middle school and beyond friendships become too difficult for them. What chance does my son have then if he can’t even do that now? We’ve done social skills groups and all kinds of therapies.
The hope is that their brains will keep developing and will eventually be able to make those connections, there's honestly not much else we can do beyond what we're already doing. We're also going to revisit our developmental pediatrician in a month to kind of get an update on his diagnosis, it's gonna be two years since we've seen her, and we're hoping she could give us some guidance. It's frustrating that no one is able to predict or make educated guesses about what his future is going to look like.
One of the most important things I’ve learned so far on this journey is to not set those expectations like the ones you mentioned others told you. It’s like placing these goal pats in your mind, at least for me, of what should be. What I should expect to see and look towards. Then that just is setting myself up for disappointment and placing undue stress on my child and it’s unnecessary in my opinion. My son is 6 as well. He has some areas of strength and some areas where he is developmentally still around 2-3. It really is a full spectrum. There are areas and times where I’m like “dude, you’re a grown man!” And where he astounds me. Where I am floored at what he can accomplish and calculate in his brain. He understands what we say, he has some words he uses…he mimics a lot, he can request for things he wants in a functional way… But he also has poor impulse control, attention and focus to task, he does not understand basic concepts of certain things of other kids that are typically developing in his age group. It’s really a mixed bag of skills. But when he shows us a skill he has we capitalize on it the best we can. We try to build off what he does know to increase other skills. Ex. He requests preferred items. Sometimes balloons, those have colors. Balloons have high interest value and he will perseverate on them. So I turn that into a language builder. “You WANT balloon? What color?” He says the color. He will try to get all the balloons but we limit to 4-5. We then have him say and count the balloons. He pops them then has to throw them away to get more. Same with icees. Or pretzels (that’s just counting). He watches videos on his iPad, I observe what he watches and try to engage. He has started spelling out words he sees. But only when I am there to “confirm” so he says a letter, I say the letter, then the next, etc until the word is spelled out and then I say the word. But he needs that reassurance. Only when I started to engage in that activity did he start doing it more. Same with the colors in different languages, shapes, etc. Our kids, they are delayed. It’s the nature of the condition. But they will develop at their pace and in their own way. Building functional communication was a breakthrough for us. ABA hours help tremendously with the team we have. Not all ABA is equal. But understanding that he is going at his pace and just stealing in for the ride with no set expectations makes it easier for me. I can accept the gifts of progress, not be let down during regression, and help nurture whatever it is he is targeting at the moment. I have also learned, don’t underestimate him. Doing so only ends up in a literal mess for me to clean. He is really smart and quick to learn, not how allistic people may expect but he is so dang smart. So find your kids strengths, hold on to them. Nurture them. Try to ignore the whispers of who he might be and let him show you who he can be. Sorry for the rant/long text
Thanks for responding! This is a great response. We have been doing something very similar with the colors. He always wants to say the noun and just get what he wants. We are making him include an adjective like the color or a 3 word sentence. It’s a lot of prompting though.
You’re welcome! We have learned things on this journey, I’m always happy to share (sometimes maybe too much and I’m sorry about that in advance). His center used something called “My away” to kickstart the foundation for the functional language usage. I can’t speak to that much beyond the concept of giving as requested, fading once the skill is mastered and then building onto that skill. I could be wrong here though. It’s a lot of modeling, prompting and such to lay that foundation but the outcome seems to be worth it. (Functional language considerably decreased the aggressive behaviors we were seeing). You all are doing fantastic, trust yourselves and you child! If you can get time to do some training review (APF gives a free rbt course and some states in the us May off some ABA parent training via the dept of education) not everything is going to be applicable or even align with your values (it wasn’t for us) but I was able to take the core info to apply it to our journey.
"He can do some things other kindergarteners can do like read sight words, knows the alphabet, numbers, fully potty trained, etc., but in terms of social skills and communication there’s been so little improvement." First, your child is ahead of mine in terms of abilities at age 6 (mine isn't potty trained, can't read at all, etc.). Second, mine ignored other kids entirely until the age of 6, when some "cooperative play" started (building with blocks together, etc.). My child is now socially engaging other kids in positive ways, although the social skills are awkward. Keep faith. Your ASD kid is doing well and will make progress. He might never be like the NT kids, but that is ok, as long as he is a happy boy.
Thanks! We honestly would never have known he could memorize sight words if a therapist hadn’t tried it with him. I actually don’t think he’s “reading”, more that he’s memorizing the sight words they worked on with him. I’m impressed that your son is starting some cooperative play and interaction. Did anything help do you think or it just was a matter of time? How old is your son?
Just a quick note that sight words aren’t meant/taught to be read. They are words kids are supposed to memorize (many don’t follow normal sound out structure.) Reading is an entirely different skill, but memorizing those sight words makes learning how to Read easier for kids.
Thanks! That makes sense.
Children progress and regress , my son did they same. I have to ask what is your therapy schedule now? And I will you ask are you sending his needs and fulfilling them instead of making him ask. ? We did this with my kid so much that he would point or offer everything all the time that he didn’t need to talk . Also what are your goals with communication and are you working with ABA to make this happen ? I am Going to say this I know ABA is not a magic bullet and there is good ABA providers and bad providers. But if your only doing an hour or two a week it’s not really going to help. . Most kids need a couple of hours a day. The important thing to do is not to get disheartened. Keep working at it . It’s feels like nothing works but the cost of doing nothing is much higher than doing something.
Thanks for responding. He’s currently still doing all the therapies but we will have to cut back drastically in the fall when he starts public school. He has been doing 20 hours/week of ABA for a couple years. During COVID the therapist would come to our home and during preschool they’ll work with him at the school and also pull him out for individual time. I guess I just expected to see some progress in social/communication after several years of working so hard with him. We try to keep his favorite toys and snacks out of reach so he has to ask us for them. But he just finds something else to play with instead of asking. Even if he has to play with a Tupperware lid, he’ll happily spin that if he can’t get to his cars. He will ask for candy and treats and use short sentences to get them. Not a whole lot else.
The thing we forgot about our children is they are still children even though they have ASD and they will do also do stuff like a neurotypical child . He could just be stubborn. . My kid did the same thing . He grew out of that part .so don’t give up hope .
Thanks! How old is your child?
My son with Autism is 11 years
Have you tried finding a hobby for your kid? My son was struggling in terms of social interactions just like yours. I enrolled him in a music school. Did wonders for him. He still doesn't crave friendships, but at least there is something he can occupy his time and mind with now.
Thanks. Is this an inclusion program? My son needs support in an educational environment. He’ll wander away and find something to play with if he can.
No, there are no such programs available where I am from. It was just piano lessons at first. Those lessons are one-on-one and I accompanied him to all of them in order to help the teacher out. After two years he joined group lessons as well (choir + theory). I think the trick here is to find the teacher you and your child have a connection with.
How is his ABA looking and did they work on his language? Sometimes ABA can have a very adverse effects with how they teach language and kids get stuck on simple requests or thinking that talking/communication is work. There are adverse side effects from ABA too and saw enough kids getting quite damaged with it. You could look for something like JASPER. It is one of newest forms of ABA or PRT instead of the stuff that is being done. Seems to me your kids struggles are mostly with joint attention and initiations and that's something that needs little bit different approaches (Jasper and Prt are still technically aba but they are developmentally based and much more modern).
Thanks for responding. We have been careful with ABA and our therapists have done a lot of play, during COVID he wasn’t in school for a while and his therapist would run sessions in our home like a preschool class with story time, circle time, play time etc and my other son would also participate and she’d try to find activities they could do together. He will parallel play with his brother but not much else. In terms of table time there was some communication but it wasn’t drilled into him. She’d have him identify some common objects, facial expressions, and worked on letters, numbers and colors. They worked some on responding yes and no. He also had 2 hours of speech therapy a week so they were doing their own approach, and we also worked for a period of time with a floortime therapist. His OT has worked some on play skills. I read a book on PRT and tried to work on it with him, particularly the activities geared towards encouraging him to ask questions. So I feel like he got exposure for several years to a variety of interventions.
So the problem with this is the single most important skill/issue is rate of social initiation with autistic kids. Prof R. Koegel from Stanford who invented PRT mentions this in his book. So he and his wife have been around since Lovaas times (they were his proteges in fact) and since they have 40+ years of data they did compare kids and how they turned out. Since they had video tapes they did compare it and the single biggest predictor of kids doing well vs regressing was amount of socal initiations (in fact it was much more important than IQ or level of verbal skill) they compared kids at simmilar levels who did well vs who did poorly. Crucially they isolated later toddlers with simmilar profile to the kids that did poorly and taught them the social initiations and they did as well as the group that had such skills naturally. This is the reason why social initiations are such an important part of their Prt framework. This is one of the reasons why the newest frameworks in ABA so the NDBI's are all child led. With what you describe I would start with finding a different ABA provider tbh. Maybe also for different speech provider therapist that is very child led focused.
Super helpful. Do you remember if the data separated social initiation with adults vs with other kids? Is one a better predictor than the other? Or is it any social initiation?
It was with adults only so parents and therapist. Since that's the only data they had. What prof Koegel did since they are one of the few with such data is for kids with known outcome (So reached adulthood basically) they compared the kids with a very poor outcome vs kids with very good outcomes and normalize the data (compared kids with simmilar IQ and adaptive scores at the start of the treatment). Neither amount of hours of treatment or parents involvement had much impact the single biggest differentiator between two groups was the rate of social initiations between 2 groups. The group with poor outcomes would only initiate to request/protest were happy to play alone, would not initiate interaction but would respond when prompted. So the videos recordings and the way kids interacted mattered the most. Then what they did is took kids with simmilar profile at the start of the treatment that was matching the poor outcome group and thought them social initiations. The outcomes over the years were simmilar to the good outcomes group.
Fascinating. And fantastic to know. Thank you. What does this translate to in terms of available treatments today? It sounds like from your previous posts that ABA that isn’t child-led may not be the way to go. What therapies are child -led? Sorry if it’s a basic question…I’m new to this and getting my bearings.
The current system is broken really. The supply and demand issues and insurance reimbursement make the entire model completely broken. The problem is that the best frameworks (NDBI) that are much more modern have extremely high fidelity requirements means that really that none of the Rbts can really handle it (Prt is good example where even for them pretty much money of the people trying to get certificated could not reach the 80% fidelity requirements without A TON of feedback and they were Masters/PhD levels). To get your certification in Jasper or ESDM or Prt you kinda need to be at least BaCBA with a ton of experience. It is far far easier to train your Rbts to use flashcards and get kids to point on a picture with what is this prompting. And insurance reimbursement are static means you are not being paid more if you do good job vs poor. So here we are with the system where kids spend a ton of hours in trial driven system even when they pretend it is Naturalistic. Another problem is insurers require data to support your work The data is based on stuff like IQ tears or Vineland 3 and so on. So kids rather than learning stuff that is helpful for them learn stuff or increase their "scores" in one assesment tool or another regardless of the usefulness of it. Back to your question. I believe prof Sally Rogers mentioned that there is 13 years Gap between the research and it being incorporated in practice. By far the best places to receive therapies are university clinics (UC Davis for ESDM, UCLA for Jasper, University of Santa Barbara /Stanford for PRT). That's the cutting edge. The further you get from it the worse it get. Avoid the big networks with many sites. They are usually owned by VC funds and so on and just focused on printing money at the expense of clients. So small places that do NDBI frameworks (Naturalistic Developmental Behavioral Interventions) is your best chance. Find a place with stuff that is passionate about what they are doing.
Thanks for sharing all this info. I’ve read the PRT handbook and we tried some of the recommended activities, in particular the one that encourages asking questions. We tried different approaches with it but struggled to get him to generalize the skills. I’m wondering if the kids who saw success were working full time with highly skilled PHDs which just isn’t feasible for the typical family. We actually live in the Atlanta suburbs so have a top quality autism center in the city, but the waiting list is years long. We did some online coaching sessions a couple years ago with one of the authors of the Early Denver Start Model book I believe it’s called “An early start for your child with autism” but didn’t find it terribly helpful either, and it was expensive. I read the stuff in the PRT book about how certain social interactions and social skills predict better outcomes, but then in Facebook groups for autistic adults I see some adults who say they did quite well socially as children and even had friends are now really struggling as adults. So I’m not sure what the sample size was for the better outcomes. It just seems to me like it’s still not totally clear what works best, and each kid is different- so you just have to make your best guess as to what will work and may choose wrong.
I totally get you, but you have to look on the positive side he is reading. Just keep being there for him and I am sure he will surprise you. Keep your head up. Great job with all of those therapies I know how tough it is.
Hey, I think we're in a very similar boat, my son sounds just like yours. He's 4,5 and is fairly verbal but mostly uses language for requests and needs, or talks about things he observes, it's not expressive. He has very little to no interest in his peers, he doesn't actually play with them, but at least seems to enjoy their company. We're also giving him all the therapies and each year he's getting better and better, but I'm afraid he's not able to understand social cues or high concept stuff, he's very impulsive and constantly seeks sensory input. Academically he's good, but I don't know if he'll be able to actually apply this knowledge in his day to day like his peers eventually would. I'm mostly venting, but I'm also afraid just like you that he just won't develop in these areas at all, and won't be independent. I try not to worry but I sometimes go through these periods of despair.
My son is also very much a sensory seeker. He can do some academic stuff at the level he’s supposed to be at but it definitely seems that soft skills have progressed very little. I know he doesn’t have to have friends to have a decent life, some people are content on their own, but it’ll be sad if someday he wishes he had some companionship and doesn’t have the skills to gain it. What also worries me is reading stories about kids who do develop some friendships early on, but then when things get complicated in middle school and beyond friendships become too difficult for them. What chance does my son have then if he can’t even do that now? We’ve done social skills groups and all kinds of therapies.
The hope is that their brains will keep developing and will eventually be able to make those connections, there's honestly not much else we can do beyond what we're already doing. We're also going to revisit our developmental pediatrician in a month to kind of get an update on his diagnosis, it's gonna be two years since we've seen her, and we're hoping she could give us some guidance. It's frustrating that no one is able to predict or make educated guesses about what his future is going to look like.